Tag: chronic-illness

Living with a Rare Disease: The Reality Behind the Curtain

For the first time since I started these infusions in late June, I got my own private room. No curtain shuffle, no strangers chewing crackers two feet away — just me, a recliner, and dimming fluorescent lights. I think the nurses felt a little sorry for me (or maybe they just wanted me contained). Either way, I’ll take it. Hopefully, it’s also my last round at an infusion center — more on that later.

I share openly about my infusions and life with a rare illness not for sympathy or attention, but for awareness. Awareness shines a light on conditions most people have never heard of. It fosters understanding, offers comfort to others facing similar battles, and breaks down the stigma surrounding invisible illnesses. What you see on the outside rarely reflects the battles happening inside. Living with a rare disease is often isolating, and the toll on mental health is profound.

For me, that illness is dermatomyositis—a rare condition in which the immune system mistakenly attacks the muscles, skin, and sometimes other organs. The result is severe pain, weakness, fatigue, brain fog, increased risk of cancer, and many sleepless nights. No known cause and no known cure, just managing. Intravenous immunoglobulin (IVIG) infusions are considered one of the better treatment options, but they come with their own challenges. Symptoms often worsen before improvement is noticeable, and results can take months—even a year—to fully appear. Because this disease is so rare, there are still many unknowns. Much of what I’ve learned has come not from textbooks or even specialists, but from connecting with others around the world in online support groups who are walking the same path. That reality is both frustrating and, at times, disheartening.

This illness also forces me to miss out on much of what once brought me joy: social gatherings, exercising, traveling, and even treasured time with my daughter. By the end of a workday, I am often completely drained, and many evenings end in tears from the relentless combination of pain and exhaustion. Pretending to look “normal” in public is its own exhausting task.

In recent months, I’ve made the difficult but necessary decision to step back in certain areas of my life to prioritize my health. While challenging, it has also been liberating. Soon, I will begin home infusions with a company that specializes in rare diseases, and their compassion has already provided a sense of hope.

A key part of this shift has been recognizing the role of stress. Stress is one of the greatest triggers for setbacks, and I can no longer afford to give it space. I’ve learned to remove myself—mentally and physically—from situations and environments that drain me. I see people every day who put their health on the backburner, and for many years, I was one of them. Not anymore. I had to learn the hard way (many years ago) that chasing “success” at the expense of my health is not truly success. Helping others will always be important to me, but not if it comes at the cost of my own well-being. Boundaries have become essential. They may not always be well-received, but they are necessary.

The truth is, I may require infusion treatments for life. The hope is to eventually reduce them as my condition stabilizes. In the meantime, I am deeply grateful for the people who check in on me. While I rarely have an upbeat answer to give, their thoughtfulness reminds me that I am supported. These past two weeks have been some of the hardest yet, and I would be lying if I said I hadn’t felt like giving up more times than I can count. But thanks to the encouragement from my online support groups and the people who continue to reach out, I press forward.

This journey is far from easy, yet it is teaching me resilience, perseverance, and the importance of releasing what I cannot control. I may not be able to do everything I once could, but I do the best I can with what I’ve got — and that has to be enough. My hope in sharing is to raise awareness, reduce stigma, and encourage others facing invisible battles. Even in the darkest seasons, there is still space for hope, healing, and connection.

And as timing would have it, this Sunday is World Myositis Day — a chance to shine a light on rare diseases like dermatomyositis and remind the world that awareness matters. Even the smallest act of recognition can make a big difference. 💙

Detours on the Road to Healing

If something rare and difficult can happen, it usually finds its way to me.

First, I was diagnosed with a rare condition that affects about 75,000 people in the U.S. Then, after starting a treatment protocol that seemed to help, I finally got back to being more active last year. Things were looking up—until the treatment stopped working.

From there, a new plan was put into place: IVIG infusions, which have a high success rate for people with my condition. I had my first two infusions on April 25 and 26. At first, the side effects were pretty standard—flu-like symptoms. But then, the day after my second infusion, a rash appeared on my arms. It slowly spread to my legs, sides, stomach, and neck. It looked dramatic, but thankfully didn’t itch or hurt.

I reported it to both my local doctor and my team at Vanderbilt. Neither had seen this type of reaction before. I was referred to dermatology for a biopsy, but by the time it happened, the rash had mostly cleared and the results came back inconclusive.

Rheumatology scheduled me to be seen virtually on May 28, but I refused to wait that long to receive answers. I found out—through a casual MyChart message from the nurse—that my treatments had been stopped without any prior discussion. No call. No heads-up. Just, “You won’t be going to those appointments.”

Naturally, I had questions—lots of them. I asked for the appointment to be moved up, and had a virtual visit this afternoon. I explained that I’m active in multiple Facebook groups for people with myositis and for those on IVIG. One of the groups is moderated by a nurse with 40 years of experience, trained at Johns Hopkins (which happens to be the top treatment center for my condition).

Through that group—and research—I’ve learned that skin reactions to IVIG are documented and not typically a reason to stop treatment. In fact, I even sent my doctor some of those articles. I told her I didn’t want to give up on IVIG just yet.

To her credit, she agreed to refer me to an allergist/immunologist to help determine if it’s still a safe option. Often, skin reactions can be managed by slowing the infusion rate or spacing treatments out over a week. What likely happened in my case is a hypersensitive reaction, which often improves with continued treatment.

In the meantime, though, all IVIG is on hold. One of my current meds is being increased, and we discussed adding another if needed. For now, I’m stuck with the pain and weakness until we sort this out.

I did not see this coming. I had so much hope for these infusions—and despite all of this, I still do. But this week has been one of those where I just want to scream “FFFFF*CCCCKKK!!!”**

I’m exhausted. Exhausted from advocating for myself constantly. Exhausted from having a condition so rare that most local doctors don’t know how to treat it. Exhausted from my doctors not communicating with each other. Exhausted from having to rely on Facebook groups for accurate, helpful information.

At this point, I’m seriously considering going to the Cleveland Clinic or Johns Hopkins if I can manage it. They have top-rated myositis centers, and I’m starting to think that level of expertise may be the only way to truly move forward.

Thanks for letting me vent. I needed it.